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“He’s such a happy baby, he does nothing but smile. I had a great connection with Alfie and I feel like I’ve got the same with Thomas.

“We’re hanging in there, keeping sane, doing as well as we can. I wouldn’t know where I was without baby Thomas.

“I’ve got something to wake up to with him. I have to keep happy for Thomas’s sake. I wouldn’t want to wake up if it wasn’t for the baby.

“I don’t like to think what it would be like without Thomas. I worry if he wasn’t here, where would I be?

“How would I be? What would my mental health be?”

Tom's partner Kate fell pregnant with Thomas as they fought to save their son Alfie, who was suffering from a rare brain condition (Image: Andy Stenning/Daily Mirror)

Tom was speaking as he and Kate revealed a £140,000 fund for Alfie will be spent on helping sick children.

The proud dad added: “When Thomas gets older we want him to understand what Alfie went through and he can know good came from it. We’d like to help children around the UK and the world.”

The picture of Tom and Thomas is a ray of light after two years of pain and torment.

Tom and Kate had fought to keep Alfie on a life support machine in a case which drew global attention.

They lost, ultimately, and their son died at Liverpool’s Alder Hey Children’s Hospital from an ultra-rare degenerative brain disease.

Kate, 21, fell pregnant with Thomas as the legal battle – which taxed her and Tom to the limits – was played out. But the couple stayed together through those tough times and are now devoted to Thomas.

Tom said: “Kate is a great mum for Thomas. She has moments when she’s upset and she has a cry. That’s what you have to do to release the emotion. Mums have that bond, especially with the first child.”

He accused doctors of separating him and Kate in hospital and telling her that the legal battle was wrong.

Tom went on: “It was hard. She questioned if we were doing the right thing. I told her what we were doing, what our friends and family were doing, was the right thing for Alfie. But it wasn’t easy. It was hard for her to hear the arguments of the doctors every day. There was a lot of strain, but we stayed together.

“We both loved Alfie and both wanted the best for Alfie.

“We remained tough. They were telling her I was wrong. She was pregnant and her hormones and emotions were all over the place.”

Tom explained: “I was nervous but felt happy. We had the test done and he didn’t have the same genes as Alfie, we were told he would be okay.

“We were happy that Alfie had a brother, it’s just that Alfie wasn’t there with us.

“It was hard because the first time we had a beautiful boy and we lost him.

“Then when we had Thomas there were tears of joy, but it felt different because we had lost our first boy.

“We were the same parents Alfie had at home, just in a different position, more tense.

“ We still speak about Alfie, but we don’t speak about the hospital. We talk about how he is going to help save a lot of children in the future.”

The couple were overjoyed when tests revealed Thomas didn't inherit the same condition as his older brother (Image: ITV/REX/Shutterstock)

Tom tearfully told how he gave Alfie mouth-to-mouth as his life ebbed away in the early hours of April 28 last year.

With tears rolling down his cheeks Tom said: “I think about that moment every day. That moment is forever in my head.

“I was giving him mouth-to-mouth, I could hear him breathing, like a sigh. It gave me more encouragement to keep trying. The noises kept coming and coming. But Kate was saying ‘Stop it, you’re just expanding his belly’. I didn’t want to stop. But I knew he was dead. At the very last moment his colour went.

“The police and doctors and nurses were looking through the door, standing there.

“I said to them ‘Can’t you do anything?’ They pulled his life support out and thought he would die in three to four minutes. But he lived for five days. We put him on our knees and sang to him, cuddled him.

Dad Tom says it feels like they have both their boys with them (Image: John Gladwin/Sunday Mirror)

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“I do feel bad for the nurses because they didn’t have the power. All they could do was stand and watch for five days while oxygen and food was withheld. Up until the last I thought we were going to save him. I tried every avenue.

“I was just a dad who wanted the best for his son.”

Alfie was born in May 2016 and while initially healthy he fell seriously ill at six months old.

He was in Alder Hey Hospital for the last 17 months of his life.

Doctors found he had the rare brain condition GABA transaminase deficiency.

They said there was nothing more they could do and advised that Alfie should be allowed to slip away.

A court agreed – prompting Tom and Kate’s long battle to overturn the decision, in the hope that Alfie could be taken abroad for life-saving treatment.

They appealed to UK and European judges and Tom even met Pope Francis, who backed the couple. But ultimately the courts ruled Alfie’s life support could be switched off.

Tom said he and Kate still see grief and bereavement counsellors as they strive for the best way forward.

And he is determined to stay strong. He added: “We are still understanding how to grieve.

“I want to be more happy around Thomas, I don’t want him to see me crying all the time or with a bad face.

“He needs a happy environment. I need to understand how to be happy.”

Alfie's legacy to help other seriously ill kids

Alfie's dad Tom says a £140,000 fund raised in his name will now help other seriously ill children.

The sum came from an “Alfie’s Army” fundraising page set up during the legal battle to pay for potentially life-saving treatment in Italy or Poland.

Hundreds of supporters also joined demonstrations in support of Alfie.

The family has applied for charity status and has already provided wheelchairs and sensory equipment for disabled children.

Tom said: “When we get something we think ‘Alfie bought it for them, Alfie is helping that person’. We’re happy that his name can live on in other parents’ and children’s minds.”

The Alfie’s Army page states: “We don’t want any other family going through what we have... we are hoping to open a foundation to help other families get the help they need.”